I first came upon the realization that talking with one's physician is a little-known art when my father was left unattended in the hospital for three days. His oncologist had ordered him admitted to have a morphine line implanted on a Wednesday; he was to have stayed five days. That Friday, no one had been in to see him, not even his primary care physician.
Despite his intellectual brilliance and deep understanding of his cancer, my father didn't have the self-authority or the courage to advocate for his own self-care. He gave over authority for his health to the medical profession, which in this case failed him miserably.
As his primary caregiver, I learned how to talk to his doctors; this skill served me well when, several years later, my husband was diagnosed with terminal lung cancer. Although I could not prevent Bob's death, I know that I was a strong advocate and was able to negotiate better than standard care.
Here are 12 steps to advocating for yourself or your loved one; when you learn how to talk to your doctor, all parties will be better served.
1) Make a list of every conceivable question, no matter how minor it might seem. It doesn't mean you have to ask every one of them; it's a process of preparation and clarity.
2) Do your homework on the Internet, if possible, so that you understand the condition you are advocating for. Be prepared to discuss diagnosis, treatment, lifestyle changes, medications, tests, side effects and prognosis. Ask questions; if you don't, your doctor might assume you understand and agree.
3) Take a tape recorder or notepad (ask first; most physicians will say yes). Make notes with the date and time of your appointment to keep for your records. If the patient is yourself, take along a friend, relative or other advocate. You will not always hear everything that is said because of stress. Likewise, if you are the patient advocate, you will be functioning as a second set of ears.
4) If you don't understand your doctor's responses, ask questions. Do not be afraid to ask for clarification; this doesn't mean you are challenging authority.
5) Bring a health history with you updated and tell your doctor personal information that you think he or she should know, including symptoms and lifestyle issues.
6) If you still have trouble understanding your doctor's answers, ask where you can go for more information. Do not leave until you have your answers.
7) Check with other members of your health care team, such as nurses, pharmacists and social workers. These people are valuable sources of information, and usually more accessible.
8) Keep an updated list of all medications, times and amounts they are to be taken, and side effects. Take them to every doctor's appointment.
9) Patients are usually lousy at speaking up for themselves, and will not always tell the truth about how they are feeling. Be sure that, if you disagree, you let the doctor know what is truly going on, but not necessarily in front of your loved one.
10) Realize that doctors are human just like you; they are not the final authority. Any time you feel uncomfortable with their recommendations, seek other opinions from other health care professionals, family, friends and your inner guidance.
11) If you have questions after the appointment, call. If you have had tests and do not hear back, call for results.
12) Always say thank you.
A good relationship with your doctor will result in the best care possible. You are half of that equation. When you take responsibility, you will feel more confident and the care will be more effective.